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EPD in Diabetes Care
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Vikram Bhugwansing
Bachelor Thesis Economics & Informatics
Business & ICT programmeStudent: Vikram BhugwansingStudent ID: 310462Supervisor: Prof. M.W. Guah, PhDCo-Reader: Prof. Y. Wang, PhD July 2009
Abstract
Diabetes is a chronic ailment where patients need continuous care. Diabetes patients can come
across various medical providers during their treatment. For the continuous care and monitoring of
these patients, the quality, accuracy and reliability of information is mandatory. This thesis is about
how the use of EPD (Electronic Patient Dossier) can help to improve the pathway of diabetes
patients. In other words, how can the use of EPD help to guide and make patients go more effectively
and efficiently through the whole treatment process? The research started with an extensive
literature review in order to obtain enough information about this topic and other topics related to
it. Then, three semi-structured in-depth interviews were taken from medical providers who are
involved in diabetes care and a diabetes patient. The main findings were that EPD can indeed
improve the pathway of diabetes patients. This because EPD makes it possible to easily and quickly
share medical information between medical providers, regardless the location. Patients don’t use the
EPD but can surely benefit from the use of it. However, they are still concerned about the security
and privacy of their EPD. I also found out that if the EPD is not used as supposed, it can also decrease
the efficiency. Further research could go deeper into the different applications of EPD in different
environments and for different diseases.
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Acknowledgements
In order to complete my bachelor in Economics & Informatics I have written this thesis. The whole
process of performing research and writing a thesis has been a very good and educative experience
for me. There are some people whom I would like to thank for providing me enough guidance,
support and information in order to complete this thesis.
First I would sincerely like to thank Prof. Matthew Guah for being my thesis supervisor and guiding,
helping en off course supervising me through the whole process. He has provided me with enough
knowledge an ability to write this thesis.
Second I would like to thank Drs. Dew Jairam, who is a general practitioner (GP), for letting me take
his interview. He has provided me with relevant information for my thesis.
I would also like to thank Anil Mohan, a diabetes patient, for letting me take his interview. Most
patients are not very “open” when it comes to their ailment. But he extensively shared his
experience about his ailment with me.
Then I would like to thank Drs. Luciel Bharos, a practice nurse (POD), for her valuable time. I was
stuck and couldn’t find a third person for an interview quickly. I could get an appointment with her
an interview with her within a very short amount of time. She also provided me with enough
information for this thesis.
Furthermore I’d like to thank everyone who contributed just a little bit to the fact that I could
complete my thesis within the given time.
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Table of ContentsAbstract..................................................................................................................................................1
Acknowledgements................................................................................................................................2
Table of Contents...................................................................................................................................3
Chapter 1: Introduction..........................................................................................................................5
1.1 Introduction..................................................................................................................................5
1.2 Problem........................................................................................................................................5
1.3 Importance of research................................................................................................................6
1.4 Scope............................................................................................................................................6
1.5 Structure.......................................................................................................................................7
1.6 Summary......................................................................................................................................7
Chapter 2: Literature Review..................................................................................................................8
2.1 Introduction..................................................................................................................................8
2.2 Patient (care) pathway.................................................................................................................8
2.2.1 The application of patient care pathways..............................................................................9
2.3 Information Quality....................................................................................................................12
2.3.1 The quality of information as artifacts.................................................................................15
2.3.2 The quality of information as deliverable............................................................................15
2.4 EPD (Electronic Patient Dossier).................................................................................................18
2.4.1 Technology..........................................................................................................................19
2.4.2 Retention period..................................................................................................................19
2.4.3 Inspection............................................................................................................................19
2.4.4 Advantages and disadvantages............................................................................................19
2.4.5 Costs....................................................................................................................................21
2.4.6 Owner..................................................................................................................................21
2.4.7 Boundary requirements.......................................................................................................21
2.5 Specialized disease monitoring systems.....................................................................................23
2.6 Summary....................................................................................................................................25
Chapter 3: Research Methodology.......................................................................................................26
3.1 Introduction................................................................................................................................26
3.2 Details of the Methodology........................................................................................................26
3.3 Main Research Questions and sub-questions.............................................................................26
3.4 Fieldwork Research Procedure...................................................................................................27
3.5 Data Analysis Technique.............................................................................................................27
3.6 Alternative Strategies.................................................................................................................28
3.7 Summary....................................................................................................................................28
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Chapter 4: General Practitioner............................................................................................................29
4.1 Introduction................................................................................................................................29
4.2 Current diabetes care.................................................................................................................29
4.3 Use of technology (advantages).................................................................................................30
4.4 Problems regarding the technology...........................................................................................31
4.5 Possible improvements..............................................................................................................32
4.6 Summary....................................................................................................................................32
Chapter 5: Practice nurse (POD)...........................................................................................................33
5.1 Introduction................................................................................................................................33
5.2 Diabetes care today....................................................................................................................33
5.3 Use of technology.......................................................................................................................33
5.4 Problems regarding technology..................................................................................................34
5.5 Possible solutions / improvements.............................................................................................35
5.6 Summary....................................................................................................................................36
Chapter 6: Patient................................................................................................................................37
6.1 Introduction................................................................................................................................37
6.2 Disease control...........................................................................................................................37
6.3 Use of technology.......................................................................................................................37
6.4 Perspective.................................................................................................................................38
6.5 Summary....................................................................................................................................39
Chapter 7: Analysis...............................................................................................................................40
7.1 Introduction................................................................................................................................40
7.2 Trend of monitoring...................................................................................................................40
7.3 Use and impact of technology....................................................................................................41
7.4 Stakeholders’ perspective..........................................................................................................43
7.5 Future improvements.................................................................................................................45
7.6 Summary....................................................................................................................................46
Chapter 8: Conclusions.........................................................................................................................47
8.1 Introduction................................................................................................................................47
8.2 Main findings..............................................................................................................................47
8.3 Lessons learned..........................................................................................................................48
8.4 Research limitations...................................................................................................................48
8.5 Thesis conclusion........................................................................................................................49
References............................................................................................................................................50
Appendix A: Interview Questions.........................................................................................................52
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Chapter 1: Introduction
1.1 IntroductionThis chapter provides an introduction of the main problem that will be researched. It also includes
the relevance of this research and the whole structure of the thesis.
1.2 Problem
Diabetes is a chronic ailment that needs almost daily treatment. At the moment there are
approximately 850.000 patients suffering from diabetes. If the care policy stays the same, this will
increase to 1.500.000 patients after 20 years. Although the care for these patients has changed over
the past 15 years, it’s still far from its optimum. In a diabetes patient’s pathway, you can come across
the following medical providers: a general practitioner, a practitioner’s nurse, a diabetes nurse, an
internist or endocrinologist, a dietitian, a pharmacist, a psychologist and an ophthalmologist (eye
doctor).
Not everyone wants to know everything about their disease, but it can sometimes be useful to read
and learn more about your own disease. The fact that you know exactly what the disease is and why
you receive a certain treatment can help to receive optimal treatment. The new achievements make
the care look a lot easier because of the multidisciplinary method of working, where the patient can
play a central role by self-control, self-regulation and other supporting tools that have been
developed.
But diabetes is still a potentially dangerous disease and with the help of previous research it is clear
that an integral method of working is needed for it. Here in The Netherlands we have a “quick-fit”
method of healthcare. This means that a patient feels sick (medically), seeks for medical help, a
diagnosis is made, then the treatment follows and the problem is then marked as “solved”.
However, this kind of method doesn’t work for patients with diabetes. The continuous demand for
healthcare on different levels plays a big role in this case. This requires a good registration, analysis
and use of medical healthcare data in the form of an Electronic Health Record (EHR / EPD). An
electronic system based on good definitions and fundamentals is necessary for improving the
pathway for diabetes’ patients.
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1.3 Importance of research
A lot of medical providers work with electronic patient dossiers already. But there also a lot that
work with paper medical dossiers. These dossiers often differ amongst the different specialties and
medical fields. Where patients and doctors ask themselves where they left off at the last consult and
the doctor quickly looks into the paper dossier and tries to visualize the current state of the patient
and what steps have to be taken now, an electronic patient dossier can easily cover these tasks and
improve the quality of healthcare.
Another issue is that paramedical groups like dietitians and diabetes’ nurses often use a separate
dossier (paper) for the medical records. With the use of an EPD the care will improve and become
transparent so that the doctor can have a good overview and focus on the different medical aspects
on several levels and the paramedics can focus more on the core of the care of diabetes, like
education and motivation. And besides the sharing of information of a diabetes patient, the need for
electronic communication between doctor and patient is growing. Good information from the
patient’s side linked to the information system(s) of medical providers can play a vital role in this
case. Complete and up-to-date information can lead to an adequate diagnosis and an effective
treatment of patients. Electronic data sharing is a handy tool to provide medical providers and
patients with up-to-date and complete information. Complications can be prevented if doctors have
complete information and this will secure the quality of healthcare.
1.4 ScopeIn order to limit the research, I defined a scope which will prevent the research from being too
broad. The scope is defined as follows:
- The focus will be on public healthcare only
- I will limit the research to The Netherlands
- I will mainly focus on medical providers and patients
- The focus will be on EPD
- The focus will be on diabetes care only and everything that involves it.
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1.5 StructureThis thesis will be divided into different chapters. Each one of these chapters will contribute in
reaching the main research goal. In chapter 2 the relevant literature will be reviewed to highlight
useful references that are relevant in this research field. Chapter 3 will extensively describe the
methodology of the research. In chapter 4 the empirical data will be worked out. Chapter 5 will
provide a critical analysis of the empirical data. And finally chapter 6 will be about the conclusions.
The main findings will be discussed. Here is where the main research question and sub research
questions will be answered. This chapter will also state the research limitations and the lessons
learned. And then all the references will be stated followed by an appendix.
Figure 1: Thesis Structure
1.6 SummaryWe saw that continuous demand for healthcare is very crucial for diabetes patients and that up-to-
date medical information is very important. Therefore it is very useful to use a good information
system for information processing. EPD is the solution here. The main concern is how EPD can help to
improve the pathway of diabetes patients. The main subjects are medical providers and patients.
Medical providers are the main users of EPD. Patients don’t exactly use their EPD, but can benefit
from the use of it.
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Chapter 2: Literature Review
2.1 IntroductionIn this chapter, the relevant literature on how a national EPD can improve diabetes’ patient pathway
is reviewed. The aim is to highlight useful references that are relevant in my research field. According
to the research questions, there are four main fields of research. The purpose of this literature
review is to review the relevant literature of these four fields. These four fields are:
- Patient pathway (or patient clinical/care pathway)
- Information Quality
- EPD / Centralized systems
- Specialized disease monitoring systems
2.2 Patient (care) pathway
There are several different definitions for “patient pathway”. According to the Department of Health
in the UK, a patient pathway is defined as followed: “The route that a patient will take from their first
contact with an NHS member of staff (usually their GP [General Practitioner]), through referral, to the
completion of their treatment. It also covers the period from entry into a hospital or a Treatment
Centre, until the patient leaves. You can think of it as a timeline, on which every event relating to
treatment can be entered. Events such as consultations, diagnosis, treatment, medication, diet,
assessment, teaching and preparing for discharge from the hospital can all be mapped on this
timeline.”
“The pathway gives an outline of what is likely to happen on the patient's journey and can be used
both for patient information and for planning services as a template pathway can be created for
common services and operations”.1
The patient pathway is different for every patient, depending on the ailment of the patient. Other
frequently used terms are: Patient Care Pathway, Patient Clinical Pathway, Care pathway and Care
Map. These pathways are used to describe a certain “route” that a patient follows in the process of a
“treatment” of a certain disease. The pathway often also describes the decisions made in this
process. The patient pathway can be used as a tool to identify communication paths between
medical providers and help to optimize the delivery of care services.
The patient pathway concept had its first appearance in the USA, at the New England Medical Center
Boston, and was developed by Karen Zander and Kathleen Bower.
1 http://www.dh.gov.uk/en/Healthcare/Primarycare/Treatmentcentres/DH_40972638
Another definition of patient care pathway is the one provided by Coughlan:
“Tools that assist in providing general guidelines for dealing with individuals and groups of patients
suffering for a wide variety of diseases” (Coughlan 2006).
The expansion of this concept took place by defining the components of patient care pathways as
comprising a time line, enclosing the categories of care, activities, or interventions, and designating
the intermediate and long term outcome criteria.
The concept became formalized in the approach where patient care pathway is seen as an algorithm
that describes the decisions that have to be made regarding the care that has to be provided for a
certain patient in a certain condition as a flowchart in a step by step sequence. They may be used in a
multidisciplinary team to deliver common protocols that indicate the best practice and concentrate
on the quality and the coordination of care.
Another definition, a well cited one, of patient care pathways is provided by Pearson et al:
“A management plan that displays goals for patients and provides the sequence and timings of
actions necessary to achieve these goals with optimal efficiency” (Pearson 1995).
Middleton describes the patient care pathway as the following:
“An outline or plan of anticipated clinical practice for a group of patients within a particular diagnosis
or set of symptoms. It provides a multidisciplinary template of the plan of care, leading each patient
towards a desired objective” (Middleton 2000).
Bandolier, an independent journal on evidence-based care, describes a patient pathway as the
following:
“Care designed to help a patient with a specific condition or set of symptoms move progressively
through a clinical experience to positive outcomes.”
2.2.1 The application of patient care pathways
There are different inflections in different countries in the use of patient care pathways. For example,
in Belgium and the Netherlands it is on cost containment and on the development of patient
centered care (Sermeus 2001).
In the UK, it is on improving the quality of care, integrating services to make them reflect the
patient‘s journey and acting as a model to ensure best practice and that guidelines are implemented.
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In the USA it has been seen as a tool to control costs while maintaining the same level of quality and
clinical outcomes (Currie 2000).
These examples present the flexibility and range of applications of patient care pathways and
exemplify the general acceptance.
A few decades ago, the healthcare sector, and also the patient pathway was a lot different as we
know it now. In the last decades, there has been a lot of technological innovation, and it also has had
its influences in this sector. In the old days there were no computers whatsoever. So the complete
organization of the sector relied on paperwork. Therefore the patient pathway was very complicated,
it also cost lot of time to get a patient at the right place at the right time, and care could reach the
patient too late. While years passed by, technology replaced paperwork, but not everything yet, so
the patient pathway is still complicated and primitive at some points.
The improvements became possible by using an IS which consists of three components: People,
process and technology. If we look at people, a lot of jobs will disappear, and only few will be
created. Training will also be necessary for the people within the IS because of missing knowledge
about new technology for example. The patient pathway will change with an IS as it gets more
simplified and will give a better overview.
Below there is a simple patient pathway defined.
Figure 2: Patient Pathway
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The pink boxes are all the points in the pathway at which a patient can arrive. The green arrows
illustrate the information flow between these points.
I assumed that there is no emergency here. Just that the patient is not feeling well and wants to visit
the GP. In order to do that, the patient has to make an appointment first, which is usually made by
the GP’s assistant. The most common or popular way to make an appointment nowadays is to call,
because nobody actually has time to go the assistant and make an appointment. The assistant has to
check the availability of the GP, after that (the confirmation) the appointment is made. The
traditional way is that the assistant keeps an agenda with all the appointments in it. They use more
advance methods these days, but we’ll look into that later on.
Then the patient visits the GP, who’s going make a diagnosis to determine what’s wrong with the
patient. The GP now decides whether the patient needs medicines, see a medical specialist or has to
go to a hospital (further referral).
In case of medicines, the doctor has to write a prescription. The patient then must take this to the
pharmacy, where they are going to prepare them for him. This is not the end of the pathway. After
the patient has taken the prescribed medicines, he must consult the GP again to see whether it cured
him or not.
Now let’s say the patient must see a medical specialist for further medical examination. An
appointment has to be made. In most cases the GP gives the patient a reference letter for the
medical specialist. Sometimes, if really necessary, the GP calls the medical specialist to make an
appointment right away. Then the patient visits the medical specialist, who’s going to perform a
medical examination. The results of this examination, along with feedback and/or recommendations,
have to get back to the GP because he is the one who has to decide what steps have to be taken
further. For example, whether the patient needs certain medicines, or does he has to go to another
medical specialist and so on.
Now suppose that the GP concludes from his diagnosis that the patient needs to go the hospital as
soon as possible. Sometimes there is an appointment needed for this. But most of the time the GP
gives the patient a reference letter with which he can be helped immediately when arrived at the
hospital. After the visit at the hospital and all the medical examinations or treatments performed, the
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information has to get back to the GP. Usually, the patient is given the dossier at discharge, which he
has to give to his GP, or sometimes the dossier is mailed to the GP.
So if we look at it this way, the patient pathway never really ends. There is always a follow up consult
or another medical examination.
The pathway described here is the most common pathway for patients. This pathway illustrates the
curative sector, which means that the patient becomes sick and the GP (or specialist) is responsible
for curing the patient. However, there are also alternative pathways. If we look at the pathway of
employees who become sick, it’s slightly different because they have a medical officer of the
company they work for who is responsible of getting them back to work. We then talk about the
preventive sector, where it is the responsibility of the medical officer to prevent employees from
“falling out”. He has to maintain the continuity of the employees. The patient pathway is also slightly
different in case of emergencies. The patient then doesn’t consult the GP, but directly goes to the
hospital.
2.3 Information Quality
Some writers don’t distinct data from information and other find the difference between data and
information the most critical. The main distinction between them is the level of abstraction. Data
carries no meaning on its own. But when data is interpreted and takes on a meaning, it becomes
information. “Data represent the content of information; its meaning is a function of data and the
context” (McMaster and Grinder, 1993; Sen, 2001).
So, in order for information to be correct, complete and of course of good quality, the data has to be
reliable. Another concept that concerns this is data integrity.
It’s about the safety of the data and it’s a synonym from reliability. There are four main points in this
concept. These are:
Data has to be correct
Data has to be complete
Data has to be on time
Data may only be added or changed through an authorized person
An example could be from the business. If a pilot from an airplane gives the message to the air traffic
control at the airport, this data has to be ‘good’.
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When the data is not correct, when for example a pilot says that he is at another height then he
actually is, it could have dramatic consequences if another airplane clashes against the plane. If the
data is not complete, for example in the case in which a pilot forget to say that he still has much fuel
on board, the controller could give him a short airstrip instead of a long airstrip. And if a pilot thinks
that a warning signal doesn’t mean anything, and after one hour the plane almost crashes, he maybe
is too late with the data.
At last, it could be very strange if a person, who is playing with radio frequencies, can send
information over the same frequency as a pilot can do. This important data about the airplane may
only be added through the pilot or co-pilot.
However, data integrity is not only important for i.e. aviation, but also – and maybe even more –
important in healthcare. Think of a situation in which a medical doctor thinks that a left leg of a
patient has to be cut because the Information System shows this info, but actually the right leg has to
be cut. That will result in a patient without legs in the end. Data has to be accurate, correct and
complete.
Also, data may only be added by an authorized person: it would be very strange if a dentist can add
information about cutting your leg into the Information System. It must be clear who is responsible
for data of patients, and who is authorized to watch, add, change and delete data.
In this case, we could think at the transaction principle of ACID2:
Atomicity: a transaction has to be totally carried out or not at all
Consistency: a transaction has to be consistent
Isolation: a transaction may not be interfered
Durability: a transaction has to be durable in such a way that this data must be saved
properly and stay stored in the same way as it is saved
If one of the principles of ACID is not right, the data is wrong or the data will be stored in a wrong
way. It has to be clear that it is very important that data of a patient must satisfy these principles. If a
medical doctor puts wrong data into an Information System, or if he puts the data wrong into the
Information System, or if an Information System does not work properly in saving and storing data, it
could have dramatic consequences.
Karl Albrecht makes a clear distinction between data and information. He defines the two as follows:
2 Ince, Darrel (2004). Developing Distributed and E-commerce applications 2nd edition ISBN: 978032115422413
- Data: The atomic raw material of human craft. It’s the irreducible symbolic level, where
alphanumeric encoding allows us to move and store data without regard to its meaning
- Information: The meaningful arrangement of data that creates patterns and activates
meanings. It’s the words, pictures, and sounds rather than the data. Information is dynamic.
It exists at the point of human perception.
He focuses on five critical points in defining a new set of models, methods and tools for
revolutionizing the quality of information.
1- Data logistics: this contains software, physical equipment, and also infrastructure for copying,
storing, transmitting, receiving, distribution, and data management. Also information on in
magnetic and paper form and other media, “specimen” form – unique originals such as
physical prototypes, designs, or other unique expressions.
2- Data protection: everything needed to protect data from theft, loss, destruction, tampering,
or sabotage. This involves both physical and electronic security, employee work practices,
and policies that secure the privacy of intellectual property and customer information.
3- Information behavior: everything people do in working with information and data. It contains
looking up information, recording information, converting information or transcribing or
interpreting it, getting information from others; and also providing information to others.
4- Information design: using tools (like software) to create information by transforming source
information into a meaningful form. Including word processors, databases, spreadsheets,
design and presentation aids, web pages, and online forms.
5- Knowledge creation: drawing insights and conclusions from existing information, inventions;
conceptualization of ideas; conceiving strategies; building models; and rethinking beliefs.
According to him, an information quality initiative consists of four phases:
1- Assessment: identifying the problems and opportunities of information quality.
2- Prioritizing change: the selection of the problems and opportunities that have the highest
payoff for the resources that are required to deal with them.
3- Redesign and re-education: changing the systems, processes, and practices, as well as
helping those who use them to benefit from the improvements.
4- Re-integration: smoothing out the seams and boundaries between the improved business
processes and systems. This is a continuous process of streamlining, simplifying, and
integrating processes and behaviors to align them more closely to the business mission.
Karl Albrecht says that it is one of our last chances to increase the return on physical and human
assets by improving the quality and reducing the costs of information.
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2.3.1 The quality of information as artifacts
When we see information as an artifact, the producer of information intents to produce a symbolic
representation of certain entities or events put it into a context and assigns it a pre-defined meaning
and transmits it to a receiver. He expects that the receiver will capture the meaning as intended.
When the transmission is regularly repeated, it becomes an information process. Order-to-delivery
systems are often of this kind.
The relationship between purpose and end result is technical quality. A requirement is that the
producer can evaluate the result ex ante, which presupposes pre-defined and shared understanding
about the aimed use of the information.
Technical quality of information thus is the relationship between a symbolic representation as
defined by a producer and the corresponding representation of a receiver. Treating information as an
artifact believes that truth conditions such as reliability, accuracy, coverage and density, are known
and agreed upon in advance, symbols have standardized meanings, and contexts are fixed. So the
quality of information-as-an-artifact lies in the way how it’s communicated. It’s only of good quality if
the receiver acquires the intention of the sender. “The technical quality of information can be
analyzed and improved with the tools of semiotics and communication theory” (Wigand et al., 1997).
2.3.2 The quality of information as deliverable
Information as a deliverable emerges from a communicative structure, usually an informal, open
system setting, where the truth conditions of data, relevance of contexts, and suitability of
knowledge and appropriateness of meanings are negotiated. Following Habermas (1998) a
communicative act is subject to four validity claims. The speaker must utter something intelligibly so
that the speaker and hearer can comprehend one another. The speaker must have an intention to
communicate a true proposition so that the hearer can share the knowledge of the speaker. The
speaker must want to express her intentions truthfully, so that the hearer can trust her. Finally, the
speaker must choose an utterance that is right with respect to prevailing norms and values so that
both parties can agree with one another.
Thus information-as-a-deliverable can be assumed to be of good quality if the data content is true
representation, the context is valid and represents a sufficient amount of variety, and meaning can
be attributed to it with a degree of inter-subjective consensus and in a way that is perceived as
useful. Good quality of information-as-a-deliverable is shared understanding. The downside consists
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of unintentional misunderstandings, going to an argumentative level of communication, switching to
strategic action, or breaking off the communication altogether.
Information Quality (IQ) describes the quality of the content of information systems. There are
several IQ dimensions that are important to people who use information. Y. W. Lee et al grouped
these IQ dimensions into four IQ categories: Intrinsic IQ, Contextual IQ, Representational IQ and
Accessibility IQ. Intrinsic IQ implies that information has quality in its own right. Contextual IQ
highlights the requirement that IQ must be considered within the context of the task at hand; it must
be relevant, timely, complete, and appropriate in terms of amount, so as to add value.
The quality of information can be approached using the distinction of information-as-artifacts, and
information-as-deliverables. The first considers technical quality involving assessments of variation,
for example: the difference between true conditions and their symbolic representations. The second
one can be seen as negotiated quality, where a variety of inputs is used to negotiate meanings. There
is much more research needed if we want to develop meaningful tools to analyze the quality of
information.
Representational and accessibility IQ emphasize the importance of computer systems that store and
provide access to information; that is, the system must present information in such a way that it is
interpretable, easy to understand, easy to manipulate, and is represented concisely and consistently;
also, the system must be accessible but secure. There is also academic research performed on the IQ
dimensions. Table 1 (next page) gives an academic view on the dimensions of IQ.
Intrinsic IQ Contextual IQ Representational IQ Accessibility IQ
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Wang and
Strong
Accuracy,
believability,
reputation,
objectivity
Value-added,
relevance,
completeness,
timeliness,
appropriate amount
Understandability,
interpretability, concise
representation, consistent
representation
Accessibility, ease of
operations, security
Zmud Accurate, factual Quantity,
reliable/timely
Arrangement, readable,
reasonable
Jake and
Vassiliou
Believability,
accuracy, credibility,
consistency,
completeness
Relevance, usage,
timeliness, source
currency, data
warehouse, non-
volatility
Interpretability, syntax,
version control, semantics,
aliases, origin
Accessibility, system
availability, transaction
availability, privileges
Delone and
McLean
Accuracy, precision,
reliability, freedom
form bias
Importance,
relevance,
usefulness,
informativeness,
content, sufficiency,
completeness,
currency, timeliness
Understandability,
readability, clarity, format,
appearance, conciseness,
uniqueness, comparability
Usability,
quantitativeness,
convenience of access
Goodhue Accuracy, reliability Currency, level of
detail
Compatibility, meaning,
presentation, lack of
confusion
Accessibility, assistance,
ease of use (of h/w, s/w),
locatability
Ballou and Pazer Accuracy,
consistency
Completeness,
timeliness
Wang and Wang Correctness,
unambiguous
Completeness Meaningfulness
Table 1: Academic view on the dimensions of IQ
The definitions of the dimension are stated below:
- Accessibility: the extent to which information is available, or easily and quickly retrievable.
- Appropriate Amount of Information: the extent to which the volume of information is
appropriate for the task at hand.
- Believability: the extent to which information is regarded as true and credible.
- Completeness: the extent to which information is not missing and is of sufficient breadth and
depth for the task at hand.
- Concise Representation: the extent to which information is compactly presented.
- Consistent Representation: the extent to which information is presented in the same format.
- Ease of Manipulation: the extent to which information is easy to manipulate and apply to
different tasks.
- Free-of-Error: the extent to which information is correct and reliable.17
- Interpretability: the extent to which information is in appropriate languages, symbols, and
units, and the definitions are clear.
- Objectivity: the extent to which information is unbiased, unprejudiced and impartial.
- Relevancy: the extent to which information is applicable and helpful for the task at hand.
- Reputation: the extent to which information is highly regarded in terms of its source or
content.
- Security: the extent to which access to information is restricted appropriately to maintain its
security
- Timeliness: the extent to which the information is sufficiently up-to-date for the task at hand.
- Understandability: the extent to which information is comprehended.
- Value-Added: the extent to which information is beneficial and provides advantages from its
use.
2.4 EPD (Electronic Patient Dossier)
The most known Information System in the Netherlands is the national EPD, the Electronic Health
Record (in Dutch: Elektronisch Patiënten Dossier). In the overview below, we call it ‘EPD’. This
example gives us a good overview about the current situation from the application of ICT in the
healthcare in the Netherlands. Also, this example gives some advantages and disadvantages people
use to support or to complain about implementing an Information System in this way. We do not
focus on other Information Systems in this example, but only give an overview.
Via a national EPD GP’s, medical specialists en pharmacists are able to share medical information.
Medical provider can treat patients quicker and request actual medical information this way. This all
happens in a safe and reliable way, 24/7 and regardless where you are in The Netherlands.
Your medical information is stored on the computers of your care providers. For example: your GP
keeps information about the consults, your pharmacist keeps information about your medicines. The
medical information isn’t centrally stored somewhere, but it’s stored on the computers of the care
providers who treat you.
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2.4.1 Technology
EPD is not a commercial software package, but a comprehensive Information System as a kind of an
umbrella. Different commercial software packages from general and medical doctors, medical
specialists etc. are connected through a national switch (Landelijk Schakelpunt, LSP) that regulates
the exchange of data between different hospitals and doctors. It has the infrastructure Aorta,
implemented and maintained by Nictiz, a national ICT institute in healthcare.
2.4.2 Retention period
The implementation of EPD is started with the general doctor (he has got a subsidy of € 5.300 for the
implementation at his office3). After this, it was extended and in 2010 they still haven’t implemented
it with every general doctor and other healthcare suppliers. The data from these medical suppliers
will be stored for 15 years. There is only one exception: data of psychiatric patients that are
involuntarily entered into a psychiatric clinic will be stored for 5 years. Data for medical examinations
will be stored as long as needed.
2.4.3 Inspection
Every caregiver gets a UZI-card (Unieke Zorgverlener Identificatienummer) with a secret code. With
this card, caregivers could get access to the LSP. Data from patients, attached to their social security
number, may only be accessed with oral permission from the patient, unless there is an emergency.
Data that will be added by a caregiver can only be changed or deleted by that caregiver. Every
patient has the right to inspect his or her own dossier (with DigiD4 and nowadays a valid identity
card). If a caregiver watches data about patients from who he don’t have the right to access, his UZI-
card can be withdrawn.
2.4.4 Advantages and disadvantages
The main reason for the implementation of the EPD is the medical failures. As mentioned before in
the theoretical framework quality control, every year 1.200 people die and 19.000 people visit a
hospital because of medical failures.
Not taking part in the EPD as a patient is possible, you can object to take part in the EPD. Another
option is the selective participation: every single caregiver has to ask if you give them permission to
enter certain data in the EPD.
3 http://devrijehuisarts.org/asp/LEPDnee271008.asp4 DigiD is a web based log in system (username/password and/or mobile phone number) for the government in
the Netherlands.19
The main advantages of EPD:
Avoidable medical failures that will result in the dead or not expected hospitalization will be
reduced according to research from the NVZA5 and a research in Texas, USA6
Another medical doctor or a second opinion doctor has immediately access to patient
information. So, a patient doesn’t have to tell his story twice, and failures will be reduced:
the second story of a patient could be another story because he/she forget something
Wrong medical failures in giving certain medicines will be reduced: other people don’t have
to interpret handwriting
The patient could get insight in his/her own dossier and can get access to his/her own data
The EPD could be developed to a certain expert system: if a medical doctor will give the
wrong medicines to a patient, the system could warn the medical doctor
The main disadvantages of EPD:
Danger of abuse and privacy. Every system is a potential goal for hacking people: also if it is
very safe
Only people that are concerned with your patient data have access nowadays. What will
happen in the future? Will also the police get access? And employers? In emergency
caregivers get access: who determines what an emergency is? 200.000 people7 will get
access to the EPD
The risk that caregivers assume that EPD is a perfect dossier: also electronically failures are
possible. And what when patients let some information out of the EPD? A patient could get
medicines from the drugstore which does not take part in the EPD. How does a medical
doctor know which medicines a patient has got from there? A medical doctor could not trust
the information and data, even in an emergency.
The overload from information: can a medical doctor find the right information he need for
the treatment?
The insight in the dossier: is it desirable that a patient can find his/her outcome of a medical
research, without explanation from a medical doctor?
2.4.5 Costs
The costs to implement the EPD at all general doctors in the Netherlands are estimated for about 200
million and at the hospitals for more than 1 billion euro. According to some sources, the total cost of
health care will decrease in the end: 10% of costs for staff. Furthermore, the budget has to take into
5 http://www.nvza.nl/artikelen/raadplegen.asp?display=2&Atoom=8895&Actie=2&AtoomSrt=2#/6 http://www.ictzorg.com/nieuws/nieuw/2234/sterke-aanwijzing-dat-epd-levens-redt-en-kosten-bespaart7 http://vphuisartsen.nl/Speerpunten/Landelijk-Elektronisch-patienten-dossier-L-EPD-de-stand-van-zaken.html
20
account: costs for implementing EPD have to pay from the healthcare budget, and implementing the
EPD means that at other healthcare has to be saved. Also, there is a risk of the high cost overrun: in
the USA costs for a system that is a bit the same as the EPD are increased to 100 billion dollar8.
2.4.6 Owner
An important question is who the owner of the EPD is. A form, in which the patient manages his or
her own data, is the Personal Health Record (PHR). In the EPD, only doctors could add, change and
delete data. Patients themselves could not add, change or delete information. They only could get
insight in their data, and deny access for certain parties to see the patient’s information.
2.4.7 Boundary requirementsLloyd and Kalra give a clear overview of the requirements which have to be met in order to realize an
EPD. Here is a quick overview of them.
2.4.7.1 Ethics and Security
The following things that need to be taken care of:
- Access of the registered person to his information
- The confidentiality, with good access rules for care providers
- Access in case of emergency
- Recording of audit trails
- Unambiguous patient identification
- Determine the authentication of users
- Loyal restitution of clinical practices
- The authorship of information in the dossier
- The role of “third parties”
- Positioning of care and patient locations
- Date and time indication of provided care and of parts of the dossier
- Change issues
2.4.7.2 Clinical requirements
The following problems should be taken into account:
- A lot of different disciplines
- No consensus yet
- Difficult to generalize
- Choice of text versus code
8 http://webwereld.nl/nieuws/54427/-amerikaans-epd-gaat-100-miljard-dollar-kosten-.html21
- Good structure is necessary
- It should stay manageable in the clinical environment
2.4.7.3 Technical requirements
The following things play a role here:
- Reliability & Availability
- Integrity and compatibility
- Different environments
- Solutions to subarea’s are difficult to generalize
- The structure for messages originates gradually
- Information models become available
2.4.7.4 Context of EPD
Distinction of different levels:
- EPD
- Maps
- Batches
- Sections with subject
- Clusters
- Items
- Values
For each component the following have to be registered:
- Identification
- Clinical meaning
- Accessibility
Per dossier:
- Identity of the patient
- Identity of the electronic record
- Identity of the managing organization
And there are different other levels.
2.5 Specialized disease monitoring systems
Specialized disease monitoring systems are widely used today to monitor different patients suffering
from different diseases using today’s technology. These systems mostly use the internet and mobile
22
technology. It’s also used to monitor diseases of animals. Some definitions of “monitoring” found in
textbooks are:
- “Monitoring is describing the ongoing efforts directed at assessing the health and disease
status of a given population” (Martin et al, 1987)
- “Monitoring is the making of routine observations on health, productivity and environmental
factors and the recording and transmission of these observations” (Thrustfield, 1995)
- “Monitoring refers to a continuous, dynamic process of collecting data about health and
disease and their determinants in a given population over a defined time period”
(Noordhuizen et al, 1997)
Monitoring patients remotely by using mobile technologies shows many potential benefits. One of
them is the experience that patients have of the improvement in quality of life when they are in their
home environment, rather than a hospital. It becomes important for patients suffering from a
chronic disease like diabetes, kidney failure etc. Even in the most modern healthcare systems the
treatment of chronic diseases is a compromise. The challenging part is to prevent that the treatment
has its impact on the patient. This is not always the easiest part. By remotely monitoring the patient,
he doesn’t have to visit the doctor or hospital every time. This contributes on minimizing the impact
of the treatment on the patient.
By using wireless (and mobile) technology, remote monitoring of patients comes one step closer.
Here are some applications that become possible due to the wireless and mobile technologies:
- Comprehensive Health Monitoring Services: these will allow patients to be monitored
anytime anywhere.
- Intelligent Emergency Management System: this system will be able to manage the large call
volume received due to an accident and effectively manage the fleet of emergency vehicles.
- Health-aware mobile devices: these will detect certain conditions by the touch of a user.
These will allow the detection of pulse-rate, blood pressure and level of alcohol.
- Pervasive access to healthcare information: this allows a patient or healthcare provider to
access the current and past medical information. This will reduce the number of medical
errors.
- Pervasive lifestyle incentive management: this can involve a small mobile micro-payment to a
user device every time the user exercises or eats healthy food. This mobile money can then
be used to pay monthly charges for wireless etc.
However, there are some general requirements that have to be met:
23
- High level security
- High level of privacy
- The usability, reliability and functions of patient’s device
- High reliable and usable wireless infrastructure that is accessible, that supports prioritized
communications, and is always available.
- A new business model
- Solutions of management challenges related to insurance payments and liability
There are also design requirements for the data collection:
- Patient usability
- Scalability
- Reliability
- Extensibility
- Financial resources
Server design issues are also involved:
- Scalability
- Interoperability
- Manageability
- Security and privacy
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2.6 Summary
Now that the literature has been reviewed on the patient (care) pathway, information quality, EPD
and specialized disease monitoring systems, enough theoretical information is gathered to perform
research on how a national EPD, can help to improve the pathway of patients that suffer from
diabetes. The quality of information is a critical aspect when using information systems (EPD). The
pathway of patients with a certain ailment can be also improved (theoretically) by using information
systems (EPD/centralized systems). That’s when the theme “Specialized disease monitoring systems”
arises, where information quality is also a very crucial aspect.
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Figure 3: Example of applications made possible by using wireless and mobile technology
Chapter 3: Research Methodology
3.1 IntroductionThis chapter describes the methodology of the research. It gives an overview of the main –and sub
research questions, how they are answered, how the data is collected and analyzed and how the
conclusions are drawn.
3.2 Details of the Methodology
The main research question (and sub – questions) were answered by performing qualitative research.
The underlying philosophical assumption is”interpretive”, meaning that there are no predefined
dependent and independent variables and no hypotheses were tested. The main goal was to
understand the social context of the phenomenon and how the phenomenon influences and is
influenced by its social context.
The research is a Multiple case study, which is the most suitable for answering a “how” question. I
used a variety of data sources to ensure that the answer to my main question will not be based upon
only one single viewpoint. I looked from a patient’s viewpoint and from the medical provider’s
viewpoint. This way I strived to have covered all the main parties involved in the problem statement
and I could compare the outcomes in order to draw (a) conclusion(s).
The data was collected from documents, textbooks and publications / previous research. There were
some publications regarding this phenomenon which helped me in doing my analysis.
Data was also collected through in-depth interviews. This will be explained in the section: Field
Research Procedure.
3.3 Main Research Questions and sub-questions
Doing research on how a national EPD will help to improve diabetes patient’s pathway, we come
across several sub – questions which must be answered in order to answer the main question. The
main question and the sub – questions are stated below:
Main:
How can a national EPD help to improve diabetes’ patient pathway?
Sub:
- How do we define the pathway of a patient with diabetes?
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- How is the technology currently used?
- Which processes are improved with the implementation of EPD, regarding the patient
pathway?
- What is EPD?
3.4 Fieldwork Research ProcedureThe data collection process started after the literature review. The literature review helped me to
gain more knowledge about available models and literature in this field of research. With this
knowledge I could come up with certain topics for my interviews. The research is qualitative so I tried
to define interview questions which could describe de thought behind the phenomenon. This led to
in-depth interviews. This way, the subjects gave their opinion about the problem, rather than giving
generalizations.
The interviews were semi-structured. Meaning that there was no formalized, limited set of questions.
There were a few predefined questions which determined the progress of the interview. Other
questions were asked, based on what the subject answered. The subjects were medical providers
and (a) patient(s). Only these two were selected because they are mainly confronted with the
problem.
I chose to interview two medical providers and one diabetes patient. This because medical providers
are the main users of information systems in healthcare. Patients don’t really use the information
systems (yet), but they can surely benefit from the use of it (even if they don’t use it). So there were
three people interviewed. The first is a general practitioner in The Hague. The second is practice
nurse in The Hague. And the third person is a diabetes patient in Voorburg. The same “predefined”
questions were asked to all the subjects. This way I could get the different viewpoints and opinions
about the problem. The set of predefined questions can be found in Appendix A.
3.5 Data Analysis TechniqueThe data had to be analyzed after collection. First, I structured all the interviews by converting all the
questions into certain topics. Then I took all the data that was relevant for my research and divided it
into different topics again. These topics were for my analysis. These topics mainly refer to the
predefined questions that were asked during the interviews.
27
After structuring all the empirical data, I was able to perform the analysis. All the interviews were
combined and compared together, based on the topics. This gave a good overview of the different
opinions of the subjects about each topic. Then I added my own critical opinion about each topic.
The results were then compared to the ones from the literature review. I did some critical thinking
again and added my opinion(s). After doing so, I was able to answer the sub-questions. Answering all
the sub-questions enabled me to answer the main research question.
3.6 Alternative StrategiesI chose to perform qualitative research because I think that it is the best way for answering my main
research question. I could’ve chosen quantitative research. But then the conclusion would be based
on numbers. So I specifically chose qualitative because it explains the thought behind a certain
conclusion, opinion, problem or phenomenon.
There is also a reason why I did not choose to do structured interviews but semi-structured in-depth
interviews. Structured interviews are not flexible and force the subjects to answer only the questions
that are asked. But semi-structured are more flexible and give the subjects the opportunity to explain
a certain answer on a question, which could lead to another question. It also enables me to go deep
into some topics.
I could have also limited the scope a little more. For example, I could choose to only focus on medical
providers. This would allow me to go deeper into the use of EPD by medical providers. I chose not to
do so because I thought that it was also necessary to get the patient’s opinion on how EPD could
improve the pathway.
3.7 SummaryThis chapter described how the research was done. We saw the details of the specific methodology
that was used. The research questions were then stated. After that, the fieldwork research procedure
was explained (semi-structured in-depth interviews). Then I described how the data was analyzed.
The results of the analysis were compared with the ones from the literature review in order to
answer the research questions. And at last I mentioned some alternative strategies which could be
used, but were not. This was a qualitative research, so the conclusions and results consisted of
explanations instead of numbers.
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Chapter 4: General Practitioner
4.1 IntroductionThe first interview was with Drs. Jairam who is a general practitioner in The Hague and owns two
practices. Just like every GP nowadays, Drs. Jairam also uses a HIS (information system for GP’s). He
uses Medicom, which is one of the most expensive ones. He has to deal with diabetes patients every
day, so he gave me some information about the current diabetes care and his opinion regarding this.
4.2 Current diabetes careIn every region there are care groups who have contracts with insurance companies to coordinate
chronic ailments in that region. Nowadays there is a nationwide system where all diabetes patients
are registered. So when the ailment is discovered on a patient, the GP registers the patient in the
care group. Then the patient is registered in the nationwide system for diabetes patients. This
registration happens once in a quarter of a year. Then the medication process starts. After first
medication, patients can visit the practice nurse for further guidance through the whole process.
Diabetes patients have to do a blood checkup four times a year. Drs. Jairam has a lab in his practice,
so the patients get an invitation to visit his practice. After the blood check-up the results are sent to
the GP. These results are then discussed with the patient. The GP (and the practice nurse) then
decide if the medication needs to be adjusted of is the patient needs to be referred to a medical
specialist. Furthermore, diabetes patients have to visit the eye doctor once a year; they have to visit
the GP at least twice a year; more complicated patients are further referred to an internist; patients
who are very fat and less mobile visit a dietitian frequently and/or a physiotherapist. If a patient
needs to be monitored daily then this is the job of the practice nurse. So in the pathway of diabetes
patients, we can come across the following medical providers:
- General practitioner
- Practice nurse
- Eye doctor
- Dietitian
- Diabetes nurse
- Physiotherapist
- Internist
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4.3 Use of technology (advantages)We saw that nowadays all diabetes patients are registered into a nationwide system. This system
automatically keeps track of every diabetes patient. There is a software developed by SHL
(foundation for GP labs) which controls everything. It automatically sends patients an invitation for
their blood checkup. The results of the checkup are then sent digitally to the GP. Drs. Jairam uses
Medicom (HIS), which allows him to directly import the results and automatically updates the
patient’s EPD. The software developed by SHL also receives all the lab results. It monitors every
patient and gives a good daily, weekly, monthly, or yearly overview of the patient’s treatment status
or improvement. The software also monitors which patients are performing better and which not.
Furthermore, it even states which doctors perform better, in terms of whose patients are better
tuned and meet their targeted values. It then also gives advice which patients need to be tuned
better. So it also functions as a decision support system. Besides that, Medicom also has a few very
handy built-in features. It has a connection to the pharmacies, so all the prescriptions are being sent
digitally. It also allows the GP to directly make an appointment with the specialist, while the patient
is still there. On the patient side, patients who inject insulin have a device with which they have to
measure certain values. Based on the measured values the patient can then determine how much
insulin needs to be injected. This device saves all the measured values. These values can then by
viewed by the GP if the patient visits him. However, these values don’t influence the decision of the
GP about adjusting the treatment or not. Only the results of the blood checkup before the consult
influence this decision. With the use of the current information, like Medicom and the one that SHL
developed, the declaration of costs also happens digitally.
Nowadays it is even possible to have a mobile clinic. Some municipalities have a mobile eye care. This
is an autobus that is equipped with everything to make photos of eyes. It has an eye doctor in it that
criticizes the photos and then sends them (digitally) to the GP along with his feedback. This is a good
solution for patients who are less mobile so they don’t have to go to a hospital. Because of the new
technology, it doesn’t matter where the photos are taken; they can be sent immediately to the GP.
Nowadays, GP’s can get a UZI (Unique Care provider Identification) card. A UZI card is like an
electronic passport for persons or organizations who work with medical information. The UZI card
authorizes a person to look into patient’s EPD. Every action of the UZI card can be traced, so it can be
easily seen which doctor looked into which patient’s EPD. A GP can only get only one UZI card
because it is based on a GP-code (a unique ID for GP’s).
30
4.4 Problems regarding the technologyThe first problem that Drs. Jairam encountered when the new software of SHL was developed was
that patients started complaining of receiving invitations from a third party for visiting the lab in
order to do a blood checkup. Drs. Jairam had to send all his patients a notification to assure them
that he was aware of this third party and that they could trust this party. Another problem is that
insurance companies don’t want to pay the administrative costs because of the Dutch National
Health Service system. This resulted in patients receiving a bill home for the administrative costs.
Drs. Jairam his biggest complaint was about the declaration of the costs. GP’s receive a certain
amount of money every year (on a quarter of a year basis) for every diabetes patient. But in order to
receive this money, the GP has to open the patient’s DBC (declaration of the diabetes patient) every
first day of the new quarter of a year, so on January 1 st, April 1st, July 1st and October 1st. The system is
very strict about the date, because if the DBC is opened on the 2nd, then the system of the insurance
companies classifies it as “invalid”.
A bigger problem is that if another doctor opens the DBC, then he gets the insurance money for that
quarter of a year. The actual problem here is that another doctor can also open the patient’s DBC.
This is possible because if a patient is referred to a hospital of a medical specialist, the patient is
signed-in into their system and they sort of “take the treatment over” for a certain period. If the
treatment ends, then the patient has to be signed out. But this can only be done by the specialist
himself or the hospital etc. (depends on the referral). But it seems that the patient is never signed-
out of the system. So if the specialist opens the patient’s DBC first, then he gets the money because
insurance companies then think that the patient is still in treatment there. And the GP then has to
come with strong evidence to show that the patient is not in treatment of the specialist anymore.
This is also why diabetes care groups want to gather as much patients as possible, because then they
would receive more insurance money. But the minister of Healthcare wants the GP to be mainly
responsible for diabetes care, because it’s cheaper. A few years ago the GP could declare the costs by
himself. But now all the information has to be sent to the care group, where it will be verified, and
then they will declare the costs to the insurance company. So if the insurance company didn’t pay for
a certain patient, then the GP has to inform the care groups about this. They will then look into the
problem and contact the insurance company. But the current system is very strict. If the smallest
thing goes wrong in the declaration process, then the insurance companies refuse to pay. They look
31
very strict at declarations because they don’t want to make the mistake of paying twice for the same
patient. They tend to find it easier to identify reasons for not paying.
Drs. Jairam also complains about the fact that a GP can get only one UZI card. He has two practices
and now he has to take the UZI card every day from one location to the other. Because if he doesn’t,
he won’t be authorized to look into patient’s EPD. He says that the fact that the UZI card is based on
a GP-code and not a practice-code (unique ID for every practice) makes him carry the card form his
one practice to the other one.
4.5 Possible improvementsAccording to Drs. Jairam, the current system can still be improved. He says that the declaration
method needs to be improved. A possible solution could be that GP’s are allowed to sign patients out
if their treatment at a specialist or hospital has ended. This way it won’t be possible for them to
declare the costs of a patient who is not in treatment (anymore). It would be even better if the
system automatically checks whether the treatment has ended or not, and then signs the patient out
automatically.
It would also be better to gather all the medical providers who are involved in diabetes care, and put
them at a central location. This would make it easier for patients. They wouldn’t have to go to
different places for blood checkups, dietitians etc. And it would be even better if diabetes patients
could receive care as near as possible from their home.
Another improvement would be that the UZI card is based on the practice-code and not on the GP-
code. This way he would not have to carry his UZI card from his one practice to the other one. It
would be better if the authorization is based on the practices and not on the GP.
4.6 SummarySo now we’ve seen how diabetes care is nowadays according to Drs. Jairam and how the technology
is being used in the current care; the problems regarding the used technology and the possible
improvements. Summarizing everything we see that the use of technology certainly brings efficiency
to the current diabetes care. But people have to adjust to the new technology and become familiar
with it. The main problem of Drs. Jairam is the declaration problem. He would like it the best if he
could sign patients out if their treatment has ended, so he can prevent that another doctor declares
the cost for a patient who is not in treatment (anymore) at that doctor.
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Chapter 5: Practice nurse (POD)
5.1 IntroductionThe second interview was with Drs. Luciel Bharos, who is a practice nurse in The Hague. Her job is to
provide guidance to diabetes patients. She has been doing this for one and a half year now and has
20 years of practice experience.
5.2 Diabetes care todayShe describes the current way of diabetes care as follows: she looks at the current state of the
patient and adapts to it. Looks at the food pattern of the patients and suggest them to adjust it if
necessary. Consulting the eye doctor once a year or a physiotherapist. Consulting the GP at least four
times a year. Lab checkups (blood and sugar) and discussing the results with the GP. Determining if
the medication needs to be adjusted or not. Let’s say that if the ailment is discovered on someone,
then they start the first step of medication. Then the patient visits her. She will then guide the
patient through the whole medication process. The second step is to monitor the patient. Check how
the patient reacts on the medication and if the medication is effective. If not, then the medication
will be adjusted. And this goes on until the maximum is reached, then the patients needs to be
injected with insulin. If that’s the case, then the patient also gets insulin therapy. She doesn’t provide
care to insulin patients. These patients go to the internist or diabetes nurse. So she doesn’t witness
the last phase of the disease. That is mostly the part of the internist. So if there are complications
with the patient, then the patients go to the medical specialist.
5.3 Use of technologyThe HIS that Drs. Bharos uses is Medicom. We’ve already seen what the main functionalities of this
HIS are. Her practice digitalized not so long ago. They were one of the last practices in The Hague to
digitalize. They didn’t immediately step over from the green card to a digital system. They did it
gradually, component after component. And now they’re completely digitalized, which means that
their diabetes care happens completely automated. That means that there are files that contain
information about the diabetes patients. She works out het “guiding” program according to what’s
written in these files. These files don’t give a very extensive description of the patients. She extends
these files by adding information about the patients during their “guidance” program, because there
are a lot of complications that come along with diabetes, like cholesterol. She takes all those
complications into account. She says that the information is better structured with the use of EPD.
Also that lab results and feedback letters from medical specialists can be easily imported into
Medicom makes it easier. With the use of EPD the efficiency certainly increased according to her.
33
On the patient side we saw that nowadays patients get a device to take home to measure certain
values. And when the patient visits the doctor, he connects the device to his computer and then
imports the values.
5.4 Problems regarding technologyDrs. Bharos works in a neighborhood where people don’t use computers that much. This means that
she still has to give paper letters to the patients. If she comes across patients who use computers,
she gives them a website where they can find more information regarding their disease, and her
email address for contact. But mostly she calls the patient by phone for making appointments.
A problem that is heard very often about the EPD is that the whole system is down for a while. This
keeps her from doing her work efficiently. If the whole system is down, she can’t continue with her
work. For example if lab results are sent by digital mail, they have to be imported into Medicom. But
if the system is down, she can’t open the results.
Another problem is that she still receives a lot of letters from labs and specialists by mail (not
digitally), despite the fact that she already has these letters digitally. Several hospitals’ EHBO posts
send the first letter with the patient. So that letter always has to be scanned manually. It is an
important letter so you can’t deny it. It once happened that a patient lost this letter. It took days
before the hospital could provide the GP with another letter. Also when patient leave the hospital,
the hospital sends a feedback letter (digitally). She complains that she almost never gets these
letters. Then she has to call the hospital to inform them that she didn’t receive the letter. The
hospital sends the letter then by fax. And she has to scan the letter manually in order to update the
patient’s EPD. So she concludes that the system is not so “error-free”. There is something wrong
with the appointment system of hospitals. Emergency appointments have to be made by phone. So
the digital appointment system doesn’t work as expected.
A popular issue with EPD is that of privacy. The insurance companies can also look into the patient’s
EPD, what is actually not the idea. Now there is law that states that insurance companies are
forbidden to look into patient’s EPD, but it’s still possible for them to access the patient’s EPD.
Although it wouldn’t be a good idea because everything can be traced, meaning that you can see
who requested which information. She doesn’t know how exactly is it is possible for them to access
it, but it has to do something with declarations of costs. She doesn’t like the fact that all your
information can be accessed by “everyone”. There is so little left of what you really own and if that is
also uncovered, then there’s nothing left of “your own”.
34
Another problem she stated was that the guidelines for declaring costs change very quickly. She finds
it very annoying. For example, sometimes she doesn’t even know how to declare the costs anymore.
You have to imagine that there are specific codes on which you have to declare. She is allowed to
make certain bookings only once in a quarter of a year and that’s why she has to make a note in the
dossier that she made the booking because sometimes you see the patient earlier than the expected
date and then you can’t declare that again. Also if the patient is referred to a medical specialist, she
can’t declare for that patient again because the medical specialist sort of takes the treatment over. It
also happens that GP’s “steal” patients from other GP’s only to have more patients registered in
order to get more money from the insurance company. Another example is that since January 2010
she is not allowed to declare for recurring prescriptions. But since everything happens digitally and
automatically, this forms another problem. When a she prescribes a medicine for a patient, she has
to check manually if it is a recurring prescription because the software automatically declares for
medicines. So she has to remove the declaration manually which can be very time consuming.
Another problem is that doctors don’t “code” the patient’s diseases. Every disease has a certain
code. When a disease is discovered on a patient, the doctor has to “code” it in the patient’s EPD.
Now most of the doctors don’t do that, because they forget, or don’t have time. This is quite
irritating if you want to get an overview or generate a report. For example, if you want to get an
overview of how many diabetes patients you have, then you have to search for them manually.
That’s very time consuming for doctors (and assistants) because the diseases are not coded. If they
were, then you could just filter them out and generate a report. So it’s good that everything is
digitalized, but the users have to use these critical features to get the optimal utility of the system.
5.5 Possible solutions / improvementsWe saw that the system is sometimes down for a while and Drs. Bharos can’t continue with her work.
This probably has to do with the infrastructure of the system. The servers are too busy which results
in a downtime. This could be improved by improving the servers, or just adding more servers. More
people are using the system, so the infrastructure has to be expanded as well.
Drs. Bharos had no possible solution for the fact that she receives the letters by digital mail and by
common mail. This issue lies with the person who sends the letter. She can’t do anything about it.
Maybe the person who sends the letter wants to be sure that she receives it, so sends it by digital
mail and by common mail. The system also has to be improved somewhat because the digital letters
from hospitals are not received by Drs. Bharos. No idea what the problem here could be. A solution
to this problem would save het the time that she spends on scanning all the letters, which are then
35
received by fax, manually. And it would also be nice if de appointment system would be improved, so
that emergency appointments can also be made digitally.
It would also be handy if the software has a feature that automatically checks whether a prescription
is a recurring one and then doesn’t declare it. This would save her a lot of time she spends on finding
all the recurring prescriptions and removing them from the declarations.
The EPD privacy issue is not solved yet. There are still many discussions ongoing about who can look
into all the information and who not. The fact that insurance companies can see all the information
has been solved by introducing a new law stating that they are not allowed to do so. But who checks
whether they really don’t do it. The system allows you to trace every action. But do they really trace
every action? No concrete solution is been found for this problem.
The “coding” problem has to do with the users of the system. If they don’t code the diseases, then
you can’t do anything about it. However, the system could be modified that it doesn’t allow you to
update the patient’s EPD if you don’t code the disease. If the system is very strict about this, then the
users wouldn’t have a choice but to code the disease, else the patient’s EPD will not be updated.
Another improvement would be if the patient doesn’t have to visit the GP so often. It would be
efficient if the measuring device that patient can take home with them, directly sends the measured
values to the GP. This will result in lee consults to the GP. Patients can then only visit the GP when
necessary, and in case of emergencies of course.
5.6 SummarySummarizing all the above, we can see that the use of technology significantly improved the
efficiency. There are always problems, but the challenge is to find solutions for these problems. Drs.
Bharos her biggest complaint is about the letters she receives by mail. She states that it would be the
best if everything happens digitally, so she wouldn’t have to scan anything ever again. But if
everything happens digitally, then there has to be a system that is fault free, and that’s not the case
(yet).
36
Chapter 6: Patient
6.1 IntroductionAnil Mohan is suffering from diabetes type 1. That means that he needs to inject insulin. The ailment
was identified on him when he was 27 years old, or you could say young. Since then, he adjusted his
lifestyle, and food pattern to the disease. He’s 41 years old now.
6.2 Disease controlHe doesn’t visit his GP frequently. He only goes to his internist twice a year. This is because he
controls the disease mostly by himself. He measures the values and then determines how much
insulin he has to inject. A week before consulting the internist, he has to go to a lab for blood
checkup. The results of this checkup are then discussed during his consult. His care takes place at
Reinier de Graaf Hospital in Delft. There they have a diabetes team, which contains all the doctors
and specialists that are involved in diabetes care. The internist is more or less the “head” of this
team. So if necessary, he refers Anil to other specialists. Anil still consults his GP, but that is if he
commonly feels sick or something. If it has something to do with diabetes, the GP then refers him to
a specialist. But if Anil already knows that it has something to do with diabetes, then he calls the
internist directly. Because the internist knows him already, he doesn’t have to visit the GP first. But if
he does, then the GP determines the urge of the case and decides whether he needs medicines of
whether he needs to see a specialist. Anil has all the information about his disease, which enables
him to control it mostly by himself. His GP is still the central person if something is wrong. He
adjusted his lifestyle in order to deal with this ailment, and gets all the support he needs from his
wife and kids.
6.3 Use of technologyHe considered that the technology had quite a good impact on diabetes care. For example the
needles with which you have to inject the insulin. The needles were very thick in the beginning,
which led to pain and marks on the skin. Now the needles are very thin. You don’t even feel them
when injecting, and they don’t leave any marks on the skin. It is also very handy that there are two
kinds of insulin injectors: one that you can use only one time and another one that can be refilled.
They are easy to carry because they are the size of a ball pen. Anil Mohan says that these minor
things matter to patients, and technology helped to make it easier. Also if he needs more needles, he
can just call the pharmacy and then pick-up the needles. This is possible because he is registered as a
diabetes patient at the pharmacy.
37
He also has a measuring device to measure certain values. After measuring these values, he can then
determine how much insulin he has to inject. The measuring device stores the values of each
measurement. When Anil visits the internist, the internist can look at these values. He remembers
that a few years ago he had to write everything down in a “diabetes book”, and had to take this book
with him to the internist every time. Now it is a lot easier that device stores the values automatically.
6.4 PerspectiveAnil states that the most important thing regarding EPD is the security of information. He’s aware of
the advantaged of the use of EPD, especially in his case, but still says that he has his doubts. He says
that is information could be lying on the streets, metaphorically speaking. He says that as long as it
only accessible by the persons who are actually authorized to it, he has no complains. But if it is
accessible to nearly everyone in the medical sector, then his medical information is as good as public.
He says that it is still not clear to him who can see what information. And if they can see the
information, can they also edit / update the information? These questions still arise. He says that the
idea is perfect, but he still doesn’t trust the system. He says that the GP must be authorized to see all
his information, and also decides which information is shared with whom. But he still says that he has
his doubts about the security of the EPD.
On the other hand he is very satisfied with the current care of his disease. He has no clear
improvement points for the current care of diabetes. He does say that he is well informed about the
risks of the disease, but not everyone is. Anil shared an experience he had when he was admitted is
the hospital for an infection in his toe. They gave him antibiotics to force back the infection, but after
three days it still didn’t help. The doctors had decided from day two that they would cut-off his toe in
order to prevent the infection from spreading further. But Anil his father in law is also a doctor (not
at that hospital) and he told them every time that it wasn’t necessary to cut-off the toe. That’s the
only reason that the doctors didn’t cut-off the toe on the second day. And the fourth day the
antibiotics finally started working. Within one day nearly the whole infection was forced back. Anil
was very happy that he has a doctor in his family; else they would have cut-off his toe unnecessarily.
He finds that the doctors don’t diagnose properly. They quickly make decisions and if you are a
patient who fully trust them and don’t know better, then they cut-off your toe (in this case) very
easily. The patient trusts the doctor with his life and trusts that if he makes a decision, then it will be
the right one, considering all the alternatives. But in this case it was not the right to decide to cut-off
his toe. His toe is fine now, so it was obviously not necessary to cut it off. He says that the “short”
diagnoses that doctors make can be improved. The doctors should also have a little patience in some
cases, and not decide immediately to cut-off parts of the body in there is an infection (in case of a
38
diabetes patient). But the fact that patients “blindly” agree with what the doctors decide has to with
the fact that they’re not well informed. So there could be something done about the information
providence of the disease.
The fact that there is a whole diabetes team at the hospital is very comforting. The advantage here is
that all the necessary specialists are at one location. So if he visits the internist, and he refers him to
the eye doctor, then he can just go to the next room (for example). He doesn’t have to make an
appointment and then come another again to consult the eye doctor, but go immediately.
He also says that the measurement device can still be improved. With the help of current technology,
the values that are measured can directly be sent to the internist (or GP) or be converted to a certain
format so that it could be sent by e-mail to him. Also, the information on the device is too brief. It
only shows the measured values, not the date and time when they were measured. There could still
be some improvements made at that point.
He also frequently forgets that he has to go to the lab for blood checkup and then to the internist. He
said that it would be nice if the system would automatically remind patients that it’s time for their
blood checkup. This would also help the patients to visit the lab, for blood checkup, in time.
6.5 SummaryWe saw that Anil has the “advantage” of being a “young” patient. He controls the disease mostly by
himself because he’s well informed about it. He experienced the technological innovations in
healthcare over the past years. He is glad that nowadays they use the latest technology in healthcare
to make it better for both medical providers and patients. He clearly sees the advantaged of EPD in
diabetes care, but doesn’t trust the system completely. He’s still concerned about the security of
EPD. Furthermore he is quite satisfied with his current care, although it could be improved
somewhat.
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Chapter 7: Analysis
7.1 IntroductionIn this chapter all the findings will be discussed and analyzed. All empirical data will be combined
together and I will analyze the main findings. These findings will be divided in four themes:
- Trend of monitoring: how is diabetes being monitored over the years up till now?
- Use and impact of technology: what different technologies are being used nowadays and what is
the impact of this.
- Stakeholders’ perspective: how do the patients and doctors deal with this; what are the main
advantages and/or problems
- Future improvements: considering the problems, what can be improved in the future and how?
7.2 Trend of monitoring
Diabetes care is differs per type. When the ailment is identified on a patient, then the type is being
determined. Type 1 patients have to inject insulin. These patients mostly consult an internist, or (as
we saw) there are patients who inject it themselves (like Anil Mohan). There are also general
practitioners who can inject insulin, like Drs. Dew Jairam. Type 1 patients need to get their insulin
from a pharmacy. This could be a recurring prescription or not. Type 2 patients receive medication.
These patients mostly consult the GP, and he prescribes the medicines they need. After the first
medication, patients can consult the practice nurse for guidance through the whole medication
process. The practice nurse determines the current health condition of the patients, and adapts to it.
She also takes a look at the food pattern of patients and recommends adjusting it if necessary. The
practice nurse also determines if the medication needs to be adjusted. The patient is being
monitored through the whole process. Patients who need to be injected with insulin also get insulin
therapy. Also every diabetes patient is registered into a care group by the GP. Care groups have
contracts with insurance companies to coordinate chronic ailments in a region.
Patients need to consult their GP at least twice a year. Most patients consult the GP four times a year
(every quarter of a year). The patient goes to the lab for blood checkup before consulting the GP. The
results of this checkup are sent to the GP, and then the patient consults the GP. The results are
necessary for the GP (and the practice nurse) to determine whether the current medication is
effective or not. If not, then it must be adjusted. Some GP’s have a lab near or in their practice (like
Drs. Jairam). This makes it a lot easier for patients. They don’t have to go to a hospital for blood
checkup. The GP also determines whether the patient needs to be referred to a medical specialist or
40
hospital. Patients also have to visit the eye doctor at least once a year. If there are other
complications, then the patient is referred to a medical specialist by the GP. In diabetes care, the
following medical providers are involved: GP, practice nurse (POD), eye doctor, dietitian, diabetes
nurse, physiotherapist and an internist.
We also saw that there are hospitals that have a “diabetes plaza”. This means that all the medical
providers involved in diabetes care are at one location. This makes it easier for the patient. The
patients don’t have to go from one location to another. He can find all the specialists at one location.
There are also patients who don’t visit the GP that much (like Anil Mohan). This patient controls the
disease mostly by himself. He only visits the GP in case something unusual occurs. He is a patient
who injects insulin, so he needs to see an internist. Just like all other patients, he needs to go to a lab
for blood checkup before he visits the internist. The internist then looks at the lab results and
determines whether he needs to be referred to another specialist or not. The internist of Anil is part
of a “diabetes plaza”. He is more or less the “leader” of this team of specialist. So if the patient needs
to be referred further, he doesn’t need an appointment because all the specialists are at one
location. He can just go and visit the other specialist in, for example, the next room. This is one of the
main advantaged of a “diabetes plaza”.
7.3 Use and impact of technology
Every diabetes patient is registered into a care group by the GP. We also saw diabetes patients are
registered into a nationwide system. This system keeps track of every diabetes patient that is
registered into it. The system (software) is developed by SHL. The software automatically reminds
patients to do their blood checkup and visit the GP by sending them an invitation to the lab or GP.
The lab results can easily be imported into a HIS and then it automatically updates the patient’s EPD.
The software of SHL monitors every patient and gives a good daily, weekly, monthly and even yearly
overview of patient’s performance. This is possible because the software also gets the lab results of
the patient. The software also indicates which patients perform better and which patients needs to
be tuned better, which patients meet their targeted values and which not. So with the help of this
software, doctors can tune their patients better in order to let them meet their targeted values. So
the software also functions as a decision support system.
Most HIS’s are connected to information systems of pharmacies and hospitals. So prescribing
medicines is a lot easier and efficient in today’s life. There are only a few GP’s that “write” a
prescription on a paper. Most GP’s use their HIS to write prescription. The prescription is then
41
digitally sent to the pharmacy and the patient can just go and pick up the medicines. This saves
waiting time for medicines which can’t be ready-made and stored in the pharmacy.
Referring patients to specialists or hospitals is also a lot easier with the use of a HIS. Most HIS's are
also connected to information systems of medical specialists. If a patient needs to be referred to a
medical specialist or hospital, the referral is done digitally. No need to call the specialist and make an
appointment, or write a letter of referral. The appointment is made immediately at the consult at the
GP.
The use of a HIS also enables GP’s and practice nurses to quickly see the necessary information of a
patient. Information can also be added easily to the patient’s EPD. The information is also well
structured in a patient’s EPD. GP’s don’t have to deal with all the paper files of patients. All the
information is in one digital file. The biggest advantage of EPD and HIS is that it is very efficient. It
saves GP’s and practice nurses a lot of paperwork, the information is better structured which results
in getter a better overview.
Technology also benefitted diabetes patients who have to inject insulin (type 1). The needles have
been improved a lot. A few years ago they had these thick needles which hurt patients and left marks
on their skin. Now the needles are so thin that you almost don’t see them, and you barely even feel
them and they don’t leave marks on the skin. The injectors are also improved. Now you have
permanent injector which can be refilled. And there is a “one time use” injector, which can only be
used one time (obviously). The size of the injector is much friendlier now. They have a size of a pen
and are therefore easily to carry with. Type 1 patients also get a measuring device to take home with
them. With this device they can measure the values (like blood pressure, sugar lever etc.) by
themselves. The patient can then determine how much insulin they need to inject. The device also
stores all the measured values each time they’re measured. A few years ago, patients had to write all
the measured values down and take them with them to the GP (or internist). Now all of that is much
easier. They only have to take the device with them and the GP (or internist) can see the measured
values.
The use of technology enabled municipalities to have mobile clinics. There are mobile eye clinics in
some municipalities. This mobile eye clinic is an autobus that is has all the equipment that is
necessary to make photos of patients’ eyes. These photos are immediately criticized by an eye doctor
and then sent to the GP. These eye clinics are mostly parked outside GP’s practices or at a central
42
location. It makes it easier for patients because they don’t have to go to a hospital. So it doesn’t
matter where the clinic is located or if it is mobile. The current technology makes it possible to locate
it “anywhere”.
Another new technology is the UZI card. It is like an electronic passport for persons or organizations
who work with medical information. This card authorizes the owner to look into medical data, like
patient’s EPD. The problem here is that not only medical providers can get this card, but also other
organizations who work with medical information. Patients are now concerned that third parties can
see their medical information. They say that there no such thing as “privacy” anymore. The other
side is that every action of the card can be traced. And every action needs to be justified. So if a third
party looked into a patient’s EPD, they need to justify why they did it.
7.4 Stakeholders’ perspective
Different stakeholders have different perspectives on the use and impact of technology. They seem
to encounter different problems regarding the current technology. GP’s seem to have problems with
the declaration of costs of diabetes patients. Insurance companies are very strict about the
declaration. Declaration can only be sent on the first day of a quarter of a year. If that’s not the case,
then the declaration is considered “invalid”. Insurance companies tend to find it easier to identify
reasons for not paying. If only the smallest things go wrong in the declaration process, they refuse to
pay. A few years ago GP’s could declare the costs by themselves. But now it’s the care group who
does this. So if something goes wrong, the GP can’t contact the insurance company directly, but they
have to notify the care group about the problem. The care group will then look into the problem.
GP’s seem have problems with this fact. They say that they “lost” control over the declarations.
Closely related to this problem is the problem of other medical providers declaring for patients who
are not “theirs”. Because of the strict rules of the insurance companies for declarations, the person
who opens the DBC of a patient first gets the declaration money. With the current technology it’s
easy to share patient information amongst medical providers. If a patient is referred, for example, to
a hospital for a certain treatment, his EPD is needed by the hospital to obtain certain critical
information. The patient is then signed in into the system of the hospital. The hospital temporarily
“takes over” the treatment of the patient. So it’s quite logical that they receive the declaration
money. The real problem occurs when the treatment ends. The patient needs to be signed out of the
system of the hospital, because he is not in treatment there anymore. If not, then insurance
company thinks that the patient is still in treatment there. So if a nurse “accidentally” opens the DBC
of that patient, the hospital again receives the declaration money. The problem is not that the
43
hospital still has the patient’s EPD, but that the hospital doesn’t sign the patient out at the end of the
treatment. This enables them to still get money from the insurance companies even when the
patient is not in treatment there. The GP then has to come up with strong evidence that the patient
is not in treatment there anymore. The insurance money for diabetes patients is quite an issue
nowadays. It even occurs that GP’s “steal” each other’s patients in order to receive more money
from the insurance companies.
The new technology also has an availability problem. Because the number of users rapidly increased
in a short period, the infrastructure can’t seem to handle it sometimes. The consequence of this is
that the system is overloaded sometimes and completely unavailable. Users (mostly medical
providers) can’t do their work is the whole systems is down. They also system doesn’t seem to work
as supposed sometimes. Feedback letters from medical specialists (or hospitals) and lab results are
not received by the recipient. They have to be sent by mail then, and the recipient have to “scan”
them to update the patient’s EPD. These results in the fact that these letters or results are sometimes
sent digitally and by mail or fax (not digital) just to make sure that it is received by the recipient. And
if the digital version is received then the recipient still receives the “non-digital” version. If the
system always worked as supposed, then everything could be done digitally. But that is not the case
(yet).
Medical providers also complain about things that change too fast and that these changes are not
processed into the systems. For example, the new rule that recurring prescriptions can’t be declared
anymore. This rule is not processed into the system. This means that it has to be checked manually if
a prescription is a recurring one, and then it has to be removed so that the system doesn’t
automatically declare it. This can be very time consuming considering the amount of medicines that
GP’s prescribe in a month. Checking every prescription manually costs a lot of time.
The main users of the system are mostly medical providers. Patients don’t seem to use the system
that much. They do seem to benefit from the system. For example, the easy of getting medicines, or
how easy it is to get an appointment at a hospital etc. Diabetes patients benefit from the fact that
their information can be easily shared. If something happens to them, then medical providers can see
all their information in a mum of time. This also goes for other patients. Patients do worry about the
security of their information. They say that their privacy is at stake. A lot of questions arise (on
patient side and also doctor side) about who has access to the information and who doesn’t. They
don’t trust the EPD concept completely because they are not well-informed about some critical
details of it.
44
It also seems that medical providers don’t use the system as supposed, which also results in
unnecessary work for other ones. A good example is the “disease coding” problem. Every disease has
a certain code (for identification). Medical doctors don’t seem to code a disease when it is discovered
on a patient. So if a report needs to be generated to get an overview of all patients who suffer from,
for example asthma, the software has difficulties finding the patients because the disease code is not
listed in the patient’s EPD. The GP (or whoever wants the report) has to scan every patient manually
to filter out the patients who suffer from the same disease. The software has built-in functionalities
to generate good reports and overviews. That’s the power of information systems: providing the
information in a structured way, so it can be easily interpreted by the user. But if the user doesn’t
use the system as supposed, then this has influence on some (maybe) critical features of the system.
7.5 Future improvements
While looking at the different perspectives of the stakeholders, we see that there are some
improvements to consider in the future. Some improvements may even be necessary. GP’s still
complaint about the declaration of diabetes patients. They would like it the best if they could control
it themselves, not the care groups. This is not very likely to happen. The care groups are there to
coordinate the chronic ailments in a region. They also have the contracts with insurance companies
to do so. I don’t think that the insurance companies would go back to working with all the GP’s. It’s
conveniently arranged for them now to only interact with the care groups than all the GP’s.
What could be improved is the process of signing patients out. It would make it a lot easier for GP’s if
they would be able to sign patients out if their treatment ended (e.g. at a hospital). Now the hospital
(or specialist) must do it, but they almost never seem to do it. The GP’s could get control over this
process. If the patient’s treatment ends, and the feedback letter is received by the GP, then he can
sign the patient out. It will also spare the insurance companies and care groups a lot of complains
from GP's about someone else receiving the insurance money for a patient who is not in treatment
there.
We still see that patients need to go to a lab, which is often located in a hospital, for blood checkup.
Then they need to consult the GP (or internist) to discuss the results (other location). If necessary,
they’re referred to a medical specialist, who is also at a different location. Then, maybe back to the
GP, and so on. The ideal situation would be if everything concerning diabetes is at one location. It
would sure benefit the patient, especially the ones that are less mobile. Then the patient doesn’t
have to go from one location to another. We saw that some hospitals (like Reinier de Graaf) have
this, but it would be ideal if every city or municipality has this.
45
The infrastructure of the system can surely be improved, to prevent downtimes, which will increase
the availability of the system. But they are already working on that. Also, a feature could be added to
the existing software to solve the “recurring prescription problem”. If the software could
automatically check whether a prescription is a recurring one and then remove it so it won’t be
declared, it would increase the efficiency. The “disease coding” problem can be fixed by making the
system a little more strict. For example, that it won’t be possible to add a disease to a patient’s EPD
without adding the required disease code, else the EPD won’t be updated. Making the “disease code
field” a required field will force medical providers to add it. Then it will be easier to generate reports
and overviews.
Improvements regarding to the security of EPD and the privacy are a little vague. Nobody knows
exactly how the security and privacy is maintained, and that’s why most people are hesitant about it.
A lot of questions would be answered if it was clearly stated somewhere how secure the system is,
who has access to an EPD etc. A new law has been introduced recently which states that insurance
companies are not allowed to look into the EPD. But who sees into it that they actually don’t do so,
and what are the consequences of doing so? It’s also clear that everything can be traced. But do they
really trace every action? Further information needs to be provided to answer all these questions.
Patients don’t seem to complain much about the software, because they are not the main users of it.
However, Anil (patient) did have some improvement points regarding the technology itself. The
measuring device can be improved. It would be ideal if the measured values are stored more in more
detail, for example with time and day. He also said that since the device stores the values
automatically each time they’re measured, it must also be possible to send these immediately to the
GP (or internist). With the current mobile technology it is indeed possible to immediately transfer the
data to the GP or internist. This could also help with patients who need to be monitored 24 hours.
Then the system automatically warns if the situation becomes critical.
7.6 Summary
So now we have seen how diabetes is monitored over the years up till now. There’s not much to
improve there. No actual problems were identified. The use of technology definitely has its impact on
the current diabetes care. Medical providers say that the efficiency has and the decision making has
been improved. But there were / are also several problems with the new technology. We also saw
the possible solutions to these problems. The patients don’t really complain about the technology
because they’re not the main users. But they do benefit from it because it makes it possible for them
to go faster through the “pathway”.
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Chapter 8: Conclusions
8.1 IntroductionIn this chapter the main and sub research questions will be answered. Now that all the data has been
collected and analyzed, and we have enough information to answer all the research questions. I will
start answering the sub-questions and then answer the main question.
8.2 Main findings
How do we define the pathway of diabetes patient?
The pathway can be different because it depends on what type of diabetes the patient has. Type 1
patients mostly consult the internist because they need to inject insulin. Type 2 patients mostly see
their GP. Obviously they are referred to a medical specialist if needed. Both patients need to see an
eye doctor once a year. They need to see the GP at least twice a year. They need to visit a lab for
blood checkup before they visit the GP (or internist). Figure 3 gives a brief overview of the pathway.
Figure 4: Diabetes' Patient Pathway
How is the current technology being used?We saw that the technology is mostly used by medical providers. The most popular one is EPD. GP’s
use a HIS to update the patient’s EPD. But a HIS also has a lot of other features. It’s used to process
medical information regarding the patient, make appointments, and write medical prescriptions
(digitally) and to generate reports and get good overviews.
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Which processes are improved due to technology, regarding the patient pathway?
Sharing information is a lot easier with the use of EPD. Prescribing medicines happens digitally.
Prescriptions are directly sent to the pharmacy. Making appointments with medical specialist or
hospitals also happens digitally. Feedback letters from specialists or hospitals or lab results can be
easily imported and the patient’s EPD is automatically updated.
What is EPD?
EPD is a comprehensive Information System as a kind of an umbrella. Different commercial software
packages from general and medical doctors, medical specialists etc. are connected through a national
switch point that regulates the exchange of data between different hospitals and doctors. It has the
infrastructure Aorta, implemented and maintained by Nictiz, a national ICT institute in healthcare.
8.3 Lessons learned
The main lesson that I’ve learned is to perform qualitative research. I already did a paper for the
Seminar Business & ICT which had to be done according to the concepts of qualitative research, but
that was in a team of three persons. Now I had to do everything all by myself. I had to stick to a tight
schedule sometimes, but that improved my skills to work with strict deadlines.
I also learned to look at things critically. Critical thinking is a crucial requirement in doing qualitative
research. I trained myself to look at things from different viewpoints and try to understand the
thought that is behind certain phenomena.
Another thing is that my knowledge about EPD and diabetes care is extended. During my research I
got to know so much more about the healthcare sector, but more specifically about diabetes care
and EPD. The things I’ve learned are mostly things that you don’t know if you are a regular patient or
just a common citizen.
8.4 Research limitations
The biggest limitation was the one of time. I only had eight to ten weeks to do this research. And I
also had another course which I had to follow and to complete. This is also the reason why I couldn’t
do more interviews. My conclusions would be more reliable if I had more empirical data.
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I tried to keep the scope very narrow. But from another viewpoint it’s still too broad. The scope can
still be narrowed down to only one type of diabetes patient, or to only one region in the Netherlands.
For this, additional research is necessary in the future. But to get a broad over of EPD in diabetes care
this thesis could provide enough information.
This thesis only considers the viewpoints of medical providers and patients. For future research, the
viewpoints of insurance companies, information systems developers and the government could also
be considered. This means that the scope could be broadened, but I decided not to do so because of
the time limit.
8.5 Thesis conclusion
How can a national EPD help to improve diabetes’ patient pathway?
EPD enables quick data sharing between medical providers. This means that medical providers can
quickly access up-to-data patient’s medical information when needed. regardless the location. That
means that certain action can be taken quicker in case of emergencies. Other processes in the
patient pathway, like receiving medicines and making appointments with medical specialists etc., are
also improved. EPD makes it easier for medical providers in “guiding” the patients through the
pathway. Because diabetes patients can come across different medical providers it is necessary that
all these medical providers have up-to-date medical information about the patient. EPD also
structures the information in such a way that it is easily and correctly interpreted by medical
providers. In short, it enables the patient to go more efficiently through the pathway.
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Appendix A: Interview Questions
1. What is, from your experience, the impact of technology on disease monitoring?
2. What is your impression of the new EPD system in the Dutch Healthcare?
3. How sis diabetes being monitored nowadays?
4. How could the way diabetes is controlled now be improved?
5. How would you suggest the use of technology in diabetes care in the future?
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